The National Cancer Patient Experience Survey – a patient writes…

The National Cancer Patient Experience Survey has been tracking patients’ experience of NHS cancer care for the last four years. And we blogged about its most recent findings when they came out in September last year.

But here, we get a personal take on the survey’s findings from Richard Stephens, who survived Hodgkin’s lymphoma 15 years ago.

Looking through this year’s National Cancer Patient Experience Survey results, a number of points made me reflect on my own experiences of cancer care – from diagnosis, through treatment and survivorship challenges, including a second cancer.

My Hodgkin’s lymphoma was missed by my GP, even though I reported classic symptoms – night sweats and weight loss, itchy legs.  I had also found a slight lump under one ear.  My GP thought it was an infected tooth, so he referred me to my dentist.

My newly-qualified dentist, Neel, decided swiftly it was not an infected tooth. He asked to feel under my armpits. I reasoned that if my dentist was asking to feel my armpits, he was looking for something more serious, so I let him.

He found more lumps, and instead of sending me back to my GP, he rang the local hospital to get me to see a specialist ASAP.

I have since asked Neel how he knew what to look for. Was it from his ultra-modern cancer-aware dental training?

“No,” he smiled.

“When I was at college my roommate had Hodgkin’s lymphoma.”

Getting referred

There are still wide variations in how quickly patients are diagnosed with cancer. The latest Patient Experience Survey shows that 16 per cent of patients saw their GP three or four times before being referred to hospital, with a further 9 per cent seeing their GP five times before referral.

And 17 per cent of patients feel they should have been referred sooner, which doesn’t surprise me.

My GP feels strongly that GPs are unfairly criticised. He points out that the statistics show that as many GPs over-refer as under-refer for possible cancers. This creates a drain on NHS resources and a lot of “worried well”.

But people go to doctors because they are already worried, and misdiagnosis or missed diagnoses cost more than over-referral, both in cash terms as well as human ones.

I know that Cancer Research UK is working with GPs to improve their awareness of cancer symptoms and their ability to refer on to diagnostic services. If UK patients are diagnosed as early as they are in similar countries, we might avoid up to 10,000 deaths every year.

Patient choice

The survey also illustrates variations in how much choice we patients are offered.

When it seemed that my first lymphoma treatment had failed, my oncologist told me I could try different drugs, or radiotherapy, or have a stem-cell transplant. She added that if the drugs or radiotherapy didn’t work, I would almost certainly be too ill to have the stem cell transplant.

So I asked the simple question; which one is most likely to work for me?

“We don’t really know,” she said. “We’ve got clinical trial results for lots of things, but not much for people having second-line treatments. We don’t know why the drugs haven’t worked on you. So far, so we can’t say for sure what will work for you. We know only what won’t, namely the drugs we’ve just given you.”

She arranged some scans (inconclusive) and then some more (ditto), and instead of calling this process “watch and wait”, which would worry me that the cancer will come back, she used the much more comforting, “We’ll keep an eye on you while you get back to normal life”.

Five months after the first treatment stopped I had a final blast of chemo and a stem cell harvest “just in case”.

So, my doctor had explained the options to me at every point.

Is this typical? The survey suggests it’s something that 14 per cent of patients didn’t experience.

And in the worst performing NHS Trust, about a third of patients (32%) said they didn’t have their choices explained to them.

The role of research

I feel lucky to have been treated in a newly-opened chemo unit in my local hospital, with specialist nurses and an oncologist interested in research.

But it shouldn’t be down to luck; these are things every cancer patient should have.

It turns out that while the vast majority – 86 per cent – of patients have seen information about research in their hospital, only one in three (31 per cent) say that taking part in research has been discussed with them.

This is a missed opportunity for increasing the participation in cancer research, especially as around two thirds (68 per cent) of patients who are asked do then go on to take part.

Moreover, since participation in research is linked to a higher number of patients reporting satisfaction with cancer services as a whole, these are opportunities missed for patients, for research, for hospitals and Trusts, and for the NHS.

Nurses know…

In my experience, nurses explained things and answered questions in the kind of conversations that I was never going to have with my oncologist, who was understandably focussing on the cancer and the treatment, rather than on me.

And anyway, I have the kind of brain that takes about three hours to digest anything I am told, so my questions always come later on.

That’s why Clinical Nurse Specialists are so important. Nine out of ten patients (91 per cent) surveyed said their Clinical Nurse Specialist answered important questions in a way that they could understand.

But the survey shows there is still a disappointing variation in access to this vital resource, with the proportion of patients from different Trusts who said it was easy to contact their Clinical Nurse Specialist ranging from 58 per cent to 92 per cent.

Access to Information

We perhaps still think of nurses as providing care, and don’t fully understand that care has to include information – what to tell and how to tell it.

But in these days of the internet, the information given needs to be accurate and honest, and it often needs translating from the general view to the particular.

Never mind the dozens, hundreds or thousands of other patients, I’m the one sitting in front of you, so what does it all mean for me? Not for me as a set of cells and biological indicators, but me as a person, with my life and my family and my hopes and my fears.

The survey asks if we feel like the NHS treated us as a set of symptoms as opposed to a ‘whole person’. Our responses show a 24 per cent difference between the best and worst performing Trust, with around only a third of patients in the lowest performing Trust feeling like they were treated as a person.

Similarly the proportion of patients who said they felt they were able to discuss any worries or fears with staff during their hospital visit ranged from as low as 49 per cent to as high as 80 per cent.

Taken together, there are still too many patients who feel we are not treated as a person, or who feel we don’t have someone we can talk to.

The importance of data

Much later I had major heart problems, which my cardiologist blamed squarely on the chemo drugs. I had a second cancer too – non-malignant melanoma, a minor skin cancer – treated successfully by hacking lumps off me at regular intervals for a year.

This seems to have been an unexpected and unwelcome coincidence, but I am pleased to see more research into genetics and the higher risk of some cancers in some people.

But the survey showed that nationally only half of patients (56 per cent) were definitely told about long-term treatment side effects that could affect them in the future.

This has prompted another load of questions for me. How often do these things happen? How many chemo patients get heart problems, and from which drug? If we are given steroids to get our weight up, shouldn’t we get diet sheets to get it down again? How many second cancers are there? Can GPs identify them? And do I have a genetic predisposition to cancer? If I do, do I want to know?

All of these things can be answered, but only if we patients keep allowing access to our data and not opt out of the NHS initiative to share anonymised data.

So I hope very much that Cancer Research UK and other charities can reassure patients about the Government’s plans for making medical records available for legitimate medical and health research (and that action is taken on the proposed EU Data Protection Regulations, which need amending urgently).

But we need to do more to make this data as good as it can be – and that means joined up care. My heart problem meant that I missed my annual lymphoma check, and I was recorded as “lost to follow-up”.

This irritates me no end. I wasn’t ‘lost’ at all; I was downstairs in the coronary care unit. As a good and compliant patient, I had asked the nurse to ring upstairs and apologise to the oncology clinic for missing my appointment, and I heard her do it.

So, do patients generally feel that the different people treating and caring for  us work well together? The survey records that only two thirds of patients (63 per cent) feel that this happens. The lowest performing trust scored only 39 per cent.

Clearly more needs to be done to create genuinely integrated health care.

So I wonder sometimes if we should be less worried about our data being shared, and more worried that often they don’t share it at all.

And as for follow-up; do they really need to follow me up every year until I finally die, almost certainly of something that won’t be the Hodgkin’s lymphoma that they are supposed to be looking for? I’m a 55-year-old ex-smoker who’s had one heart problem, and gets annual lung infections. Would giving me chest x-rays rather than – or as well as – blood tests be a much more useful follow-up?

So for me as a patient, while the survey addresses current cancer care models, it doesn’t yet ask the sorts of questions that address these broader issues for patients with additional needs, such as having multiple long term conditions.

Thanks to research into the causes and treatments of cancer, we have doubled the number of long-term survivors in the past decade or so, and aim to increase it to three-quarters of all patients in the next 20 years.

But we need to start addressing the challenges those survivors will face. And we need to start by asking our current survivors and patients about them.

•  Richard Stephens chairs the National Cancer Research Institute’s consumer liaison group.